RI USH SIG – Spring Newsletter

Retina International Usher Syndrome Special Interest Group
Spring Newsletter – Update on events & news relevant during the COVID-19 pandemic
RI USH SIG

Dominique Sturz (AT), Melissa Chaikof (US), Carol Brill (IRL), Dario Sorgato (IT)

We hope that you are all fine and healthy despite the COVID-19 pandemic. We are happy to issue our Spring Newsletter providing you with an update of USH related events scheduled for this year and with news relevant during the COVID-19 pandemic.

USH related events 2020

RIWC 2020 – 21st Retina International World Congress scheduled for 4-6 June 2020 in Reykjavík, Iceland, is postponed to 2022
Retina International World Congress brings together some of the world’s foremost retinal scientists and clinicians along with the global leaders in patient advocacy and peer support. The Nordic Ophthalmology Congress is also postponed to 2022 at the same venue. During the events we are planning to hold an Usher Syndrome satellite meeting. https://www.riwc2020.is/#covid

International Usher info Symposium scheduled for 26-27 June 2020 in Paris, France, is postponed

Details will be announced as soon as possible, we will keep you updated.

Scientific & Patient Sympsoium organised by Fondation Pour l’Audition and Fondation Voir et Entendre in the framework of the LIGHT4DEAF project dedicated to Usher syndrome. http://pro.usherinfo.fr/2020-international-usher-info-scientific-symposium/

USH Connections Conference – Usher Syndrome Coalition 10-11 July 2020 in Austin. TX, United States, online

This year’s USH2020 Connections Conference will be a virtual event, the in person event is postponed to 9-10 June 2021 at the same venue. https://www.usher-syndrome.org/ush2020.html

Relevant Rare (Eye) Disease related events

ERN Eye General Annual Meeting scheduled for 18-19 March 2020 in Vilnius, Lithuania, is postponed to 14-16 October 2020.

The General Annual Meeting of the European Reference Network for Rare Eye diseases WRN Eye will take place either as a face-to-face meeting in Vilnius or as an online meeting. News about European research projects and projects done in collaboration with international partners, as well as an update about new full ERN Eye members and affiliated partners should be available by then. We will keep you updated.

https://www.ern-eye.eu/news/calendar/calendar-specific/agenda-ern-specific-ern-events/ern-eye-general-annual-meeting-vilnius-postponed-to-14th-16th-october-2020

European Conference on Rare Diseases 15-16 May 2020 (planned to be held in Stockholm) now available in online format

ECRD is the globe’s largest, patient-led rare disease event with 1300+ attendees and 100+ speaker. For the first time 100% online and with reduced registration rates it is an unrivalled opportunity to learn, network and exchange. Plenary sessions will be broadcasted live in English, French and German. Live captions and sign language in English are announced to be available.

https://www.rare-diseases.eu/programme/

Precautions for people living with vision and/or hearing loss due to Usher Syndrome during the COVID-19 pandemic

BEFORE and AFTER each physical contact/interaction/communication:

• wash your hands 20 seconds following the instructions of the World Health Organisation WHO with liquid soap or use alcoholic hand sanitizer

For people not living in the same household like personal assistants or caretakers and interpreters (sign language, tactile language, finger alphabet)

BEFORE each contact/interaction all should:

• wear face masks (disposable or self-made/washable, preferably clear masks)
• wash hands or use hand sanitizer according to WHO recommendations
• disposable or washable cotton gloves recommended for tactile communication

AFTER each contact/interaction:

• dispose masks and gloves in household waste or
• wash cotton masks and gloves
• use hand sanitizer or wash hands with liquid soap

In public areas:

• leave home only in accordance with your national containment directives
• never touch your face (most specifically mouth, nose, eyes) to prevent infection
• wash hands or use hand sanitizer after each contact with surfaces or packaging material (plastic, metal, cardboard, paper) when in public transports, taxis or when shopping daily needs
• wear masks and gloves (disposable or washable)
• try to save surgical and FFP masks for Healthcare Professionals and caretakers and other vulnerable groups at higher risk
• use disposable tissue or sneeze into elbow to protect others

For medical consultations:

• contact your doctor or healthcare provider by phone or email before any consultation,
• see health care professionals or go to hospital in case of emergency (immediate vision loss is an urgency) or for (re-)scheduled assessments and follow-ups or use telemedicine (online or phone consultations)
• apply additional precautions as described above
• avoid touching door handles etc. or use disinfectant tissues for surfaces

In case of hospitalization and/or treatment due to COVID-19:

• always inform healthcare providers of your condition, esp. your retinal condition
• all treatments have to be strictly prescribed by healthcare professionals only and to be agreed with your eye expert (beware: hyrdoxychloroquine or chloroquine use contra-indicated with retinal or neuroophthalmological conditions)
• no self-medication! (beware: hydroxychloroquine or chloroquine can be harmful for retina and toxic if associated to specific conditions such as heart problems)

ERN Eye has put together some useful information (patients’ FAQs) here:

https://www.ern-eye.eu/update

We are very committed to making our communications accessible.  If you wish to receive this newsletter in an alternative format, please let us know by emailing usher@retina-international.org and we will endeavour to issue future newsletters in your preferred format.

We hope you enjoyed our newsletter and we will come back to you soon. Stay safe!

You can download our Spring Newsletter on gene therapy for Usher Syndrome here: http://www.retina-international.org/what-we-do/ri-ush-sig-newsletter/

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